March 26, 2007

Hello Everyone,
First I want to thank each and every one of you who thought about me, prayed for me, and fasted for me this past couple of weeks. I am extremely grateful for all of your effort. I'll quickly just go over what happened for those who don't know, and then tell you how I'm doing! I just have to say that I feel quite uncomfortable being in the center of attention, and I hope that soon someone else can take the spotlight for a while!!
My M.S. had seemed to be fairly stable since around August. Not symptom-free, but stable. Then in late November I started getting some fogginess in my left eye which was new for me, and then in mid-december I noticed stiffness in my legs I hadn't had before. In late-December I was in that car-wreck with Naomi which I think may have triggered the stuff that happened after. After we moved to Austin I started getting additional symptoms one after another. My legs became significantly more numb and stiff. My feet got extremely numb-- in fact most of my toes were "dead" to the touch. My left arm started getting weakness and numbness in the fingers. Then two weeks ago, I was trying to sweep and mop my kitchen floor. Not exactly a strenuous job, but by the end I was having a really hard time even staying on my legs, they were so weak. I lay down to rest for an hour and then attempted to clean one of my bathrooms, but found I could not walk or remain standing, so I cleaned it while sitting on the ground! I just sat on the recliner for the rest of the day and on Tuesday I thought I felt a bit better. I was starting to get sick, though-- a cough and fever that my boys had been passing around. As the day went on my left leg got weaker and weaker until I could not actually lift it off the ground and I was dragging it around like some kind of psycho-killer. I had made an appointment the day before with my neurologist for Wednesday, so I knew I would be seeing the doctor the next day.
On Wednesday I woke up and hadn't improved at all. It took me several minutes to get *into* the tub and then honestly about 15 minutes to get *out*. I just couldn't bear weight on my legs at all. I somehow managed to drive down to Ben's work so he could watch the boys during my appointment, but it was scary. I had Ben drive when I got to his office. He decided to come with me to my doctor's appointment and had his friend Eddie come along to watch the boys.

Ben helped me get into the hospital, there is no way I could have walked on my own. When I saw the doctor he thought I should be admitted for IV-steroids. Ben asked him lots of questions and I sort of sat there in shock. The big question was whether he thought I might have primary-progressive MS rather than recurring-remitting. PP MS is less frequent, and often occurs in individuals diagnosed at an older age than I was, but the pattern of symptoms are more similar to what I've experienced-- very very short periods of time between the appearance of new symptoms (for me the longest has been 6 weeks), and then sort of gradual appearance of symptoms instead of sudden and really obvious. Also the clustering of MS in my family is more characteristic of PP MS than RR MS. Although in my family I don't have siblings with MS but instead cousins and aunts and second-cousins.
Anyway, the doctor said that most patients with RR or PP MS will respond to IV steroid treatment, but with PP MS, the symptoms will gradually return over several weeks whereas with RR MS, the flareup will end and the symptoms will not return. So the next several weeks will be interesting, to say the least.
After I was admitted I was sent down for 2 hours of MRI's. The MRI machine actually seems to kind of send me into a trance which made it seem like less than 2 hours which was good. The next day the doctor told me that the MRI scans showed very few lesions in my brain (good), but a lot more on my spinal cord (bad). I'm glad because I dont' want my brain affected-- I like my brain! But that pattern is also more characteristic of PP MS, so that's not good.
I had 5 courses (1 a day) of the IV steroids which I tolerated just fine. My blood sugars did get pretty high (up to like 250 which is REALLY HIGH I thought), but I guess not dangerously high, and pretty normal for steroids. I also was able to work with an occupational and physical therapist who were able to help me figure out how to walk around with a high-stylin' four-pronged cane and how to do things around my house easier. Ben came each day with the boys and wheeled me down to the cafeteria to eat lunch. I had several visitors from the ward, and friends who came to see me, so I was not lonely. By the last day I was much steadier on my feet and feeling a lot stronger. I was discharged on Sunday, and the good news is that if I need this treatment again, I should not have to be hospitalized. I will be able to just go in on an out-patient basis which will be much easier!

I hope I will not need this treatment again, though, because for me the really bad part is after the treatment is over. I've experienced this the other times I was on steroids (the oral kind), but it was much worse this time. I think the sudden withdrawal of the steroids just makes my brain kind of go crazy and I found myself in a really bad depression. Like, worse than the post-partum hormone craziness. I was feeling really, really horrible from Monday-Wednesday, and then felt somewhat better on Thursday, even better on Friday, and then back to my "normal" self on Saturday. So it didn't last too long, but for me that whole experience is really frightening. I was so glad that Naomi came on Tuesday. Not only was she able to help me quite a bit with the boys and the house, but it was really good for me to have her there to help me out mentally and emotionally.
Anyway, the steroids DID help me tremendously physically, the mental stuff notwithstanding, and I've noticed quite a few improvements. I feel stronger in my legs than I have in several weeks. I've gotten some feeling back in my feet-- although my 2nd and 3rd toes are still "dead." One of the nice improvements is that my feet no longer feel freezing all the time. That was one thing that has been really bugging me for a few weeks-- my feet felt cold ALWAYS, even in shoes and socks, even in a hot bath! So not having freezing cold feet has been very nice. I haven't had the spasticity in my legs that has made getting up from laying down or sitting down very dangerous! Whenever I would get up, my legs would lock up for several seconds, preventing me from walking until they loosened up. This has been the cause of a number of falls recently, so that has also been a great improvement.
On Saturday we went down to Barton Springs, and I was able to go on quite a long walk and enjoy the sunshine-- the only day of sun we've had for 2 weeks! Yesterday it was back to clouds and rain. I had bought a single-point cane last week (I'm just not ready for the 4-pronged cane yet! And I don't think I need it), and that helped me a lot, too.
So anyway, I'm very pleased with how things are going, and I'm feeling much, much more optimistic than I was before. I know that my symptoms might still come back, and the PP MS diagnosis is still possible, but I'm just not feeling like that is going to happen. I really do feel like I am going to continue to improve, and maybe I won't ever be 100% again, but I think I'm going to get back enough function that I can take care of my kids and my house and be active and do most of the things I want to do with my kids, and that will be a huge blessing.
So, that is the news from Austin, TX.
No stories about my boys right now, but in my next letter I'll give you some. I just wanted to update everyone on my health situation.
Again, thank you all sooooo much for your prayers and fasting. I know that that and the priesthood blessing Ben was able to give me has made a big difference.